Having a chronic illness and chronic pain when you’re young can prevent you from being able to go to college, go to work or have a career. When simply getting through each day is your full-time job and doctor appointments wear you out, you need to adapt. Well, if you want to feel fulfilled and like you aren’t missing out on your life, you need to adapt.
I’ve watched my friends graduate from college, get settled into their careers, get married, have children, the whole shebang. Whereas I’ve remained stagnant in some of those areas.
However, I’m very fulfilled. I have amazing friends, an incredible significant other, I’m constantly learning new things and I take some risks every now and then.
What has helped me the most are these few things:
1. Social media. I may not be able to be out and about with my friends or stop by and visit with them regularly, but I can remain actively involved in their lives and share mine with them through social media, chatting, sharing pictures and texting. We always try to get together for dinner every few months but we stay in touch regularly online. If it weren’t for social media, I wouldn’t even know my significant other! I met him through a friend, and that friend found me on social media. It can be a very useful tool to keep you from feeling isolated and left out of life.
2. I have a ton of passions and interests. I have ones I can do even when I’m in really bad shape physically, when I can’t sit up straight or move much, like puzzle books, puzzles and games on my phone. Crocheting. Console and PC gaming. Writing poetry, songs and articles. Taking free online courses from Harvard and other online learning resources. Then there are the hobbies that require me to sit up and move a bit, like pixel bead art, playing the ukulele, playing the piano, singing, drawing, painting, sewing.
3. Taking a risk every now and then. When I have an amazing opportunity come up, like playing the piano for a Gala, or tickets available as a gift to me to go to a comic-con or concert, I leave my fear behind me, the worry that I may be too sick to do it. Sometimes, the day comes and I’m not well, but with my meds and stubborn personality, I’m often able to push through (as long as they are spread out and I’ve prepared ahead of time, resting the week before. I also need to give myself time to recover after.) I never regret these risks. They are some of my most memorable and satisfying moments. Living in fear of the “what ifs” is no way to live. If it winds up that I am incapable of doing what I agreed to do, it’s OK, because I’ve made back-up plans. Informed others of the possibility. Have found a way to make it work. It would be easier if I was healthy, but it is still something that can be accomplished. I’ve gone to concerts or events when I could barely walk. The people who work at these venues are incredibly helpful. Found me wheelchairs. Showed me through special doors inside that meant getting to the seat quicker, and I never even had to ask them. They saw me struggling and offered.
4. I rearranged my definition of a happy life. Having a degree in a certain field would be lovely and is still something I hope to achieve, but even if I never do, I’ve realized this is not what will make me happy. I’m already happy because I’ve focused on building close, loving relationships. I decided learning and doing interesting things is more important to me than having the degree to prove it. I’m always learning. Music is my biggest passion. So, I’ve found ways to share it with others from the comfort of my own home and do it for the love of it, when I’m able.
I have goals, and I do hope my health improves over time, but even if it doesn’t, I want to look back, five, 10 years from now and feel satisfied. Have memories instead of regrets. Everyone is different. What will fulfill your soul will be different than what fulfills mine. Identify what will make you happy and what is important to you. Then, brainstorm to find creative ways to achieve it. It’s likely you won’t be able to achieve them all, but even healthy people struggle to achieve all their goals. It won’t always be easy, but it’s worth it!
You deserve to be happy!
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Thinkstock photo via stevanovicigor.